“A person with autism does not live in their own world”: 13 years breaking down stigmas

Sebastián Villarraga describes himself as a calm and kind person, always willing to support others. He studied agricultural business management at SENA. He also likes music, animals, literature, video games, and nature. Additionally, he is a person with autism or on the autism spectrum and a co-founder of the Colombian League of Autism, LICA. He has participated in the organization’s workshops and activities since its beginning. This has helped him improve his social interaction, “to get along very well with other people and to be a little more open, expressive, and also to be more understanding with others, to better recognize people’s expressions, recognize some situations, and the correct way to react.” The support he has received has allowed him to break prejudices associated with people with autism and, instead, foster his autonomy and self-determination.

Sebastián Villarraga, co-founder of LICA-Colombian League of Autism.

“Nothing about us without us” is the slogan of the disability rights movement. With this, they seek that no decision affecting or impacting their lives can be made without taking them into account, without guaranteeing them active participation. People with disabilities are a heterogeneous group, and within them are people with autism. This condition means they communicate and interact with their environment in a different way than most people do, which often involves facing barriers to accessing education, comprehensive health care, a job, establishing interpersonal bonds, and participating in the community.

As a spectrum, autism is diverse and broad. This means that each person has unique characteristics and requires differentiated support to function in daily life. “Autism is so diverse that it is a challenge for the person who lives it, for the family who lives it, for public policies, and for the community,” says Betty Roncancio, LICA director. This organization was created with the purpose of raising awareness about what autism is, confronting the exclusion that society imposes on people with this condition, and working for the full guarantee of their rights. Betty and her family decided to found LICA years after receiving her son Juan José’s diagnosis and facing different barriers to accessing health and education services. Juan José, like many children with autism, was denied access to many kindergartens because they believed they were not prepared to receive a person with autism, or that he would receive better support in specialized institutions, even though this implies denying his right to education, excluding him from a regular school environment, and preventing him from learning on equal terms.

Although there are no statistics in Colombia, in 2023, according to the World Health Organization (WHO), 1 in 100 children has autism. The lack of official data in the country is a sign of the ignorance about the topic. In 2009, when LICA’s work began, information was scarce and confusing. For this reason, its founders thought it was relevant to start by providing education. In 2010, one year after its creation, they held the 1st International Autism Congress. They have also organized walks on the occasion of World Autism Awareness Day, which is celebrated on April 2. The first year, about 200 families gathered.

For the organization, it is also fundamental to provide support to the families of people with autism, giving them information and tools for the process of diagnosis, acceptance, training, and empowerment to be able to face situations with assertiveness. That is why LICA leads the Colombian Autism Spectrum Network (RCEA), which connects families and organizations from 15 cities in Colombia to seek to guarantee the rights of people with autism.

After 13 years of work, LICA has achieved a great impact on the lives of people with autism through activities such as walks, murals, conferences on inclusion in libraries and universities, social skills workshops, among others. They have participated in the formulation of different laws on disability, mental health, and also in resolutions from the Ministry of Health and the Ministry of Education. In these spaces, they have managed to give a place to the needs of people with autism. They were invited by the Ministry of Health to create the autism protocol, which establishes a path for the diagnosis, treatment, and comprehensive care of people with autism in the healthcare system.

Fabián, Sebastián and Juan, after the social skills workshop at the LICA facilities.

It is necessary to change the way society views people with disabilities, in this case with autism. “The idea persists that they are always children, that they must always be under the supervision and care of their family, that they cannot make decisions, that they cannot have children,” says Betty. A person with autism does not live in their own world. On the contrary, they see, hear, feel, think, and relate in the community, “they can have any task, function, or job, from developing software, carving wood, or being very good at growing something, like any person.” Society must understand that autism (and disability in general) is not an illness, but a condition that means people need support to participate in social life on equal terms. It is also important to have official statistics and a national public policy that allows for comprehensive care for people with autism. And, above all, that no one should replace their voice or doubt that they can make decisions, providing them with the support they may need to promote and recognize their autonomy.

(*) Researcher at Dejusticia

(**) This article is part of the special #TejidoVivo, a product of a journalistic alliance between the Dejusticia study center and El Espectador.